This blog is about my life dealing with multiple digestive problems and feeding tubes. But it is also about my life in general, being married to M, working as a psychologist, having fun, being happy, and living life to its fullest no matter what.

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Tuesday, June 30, 2009

Tomorrow finally is the big day - it's Mic-key button day!!! M and I will leave Vienna early in the morning, I have to be at the clinic in Graz by 11 and at 1 PM I have my appointment with Prof. H. to get my peg-tube changed to a low-profile mic-key button.
I will get a propofol-anesthesia because he has to remove the inner bumper endoscopically and I sure don't want to be awake for that.

A couple weeks ago Prof. H. sent me an e-mail telling me that I should have a look at the centimeter markings of my g-tube and tell him what number was closest to skin level so he could order the right button size for me. I was really unsure about this, because I had read on the internet that the button size is usually determined after the g-tube is taken out with a stoma measuring device - mic-key buttons come in sizes between 1 and 4.5 cm and it is really important to have the right size button inserted to prevent leakage.

When my dietician called me last Wednesday to tell me that she had received an e-mail from Prof. H. with the details of which button size to order for me and told me that he wanted her to order a 1 cm button, I really started questioning all of this long-distance determining for my button size. What if I went to Graz, got put under, had my g-tube taken out and then the button was the wrong size? That really would suck. Mic-key buttons comes in sizes for all ages and a 1 cm button is a button that would usually be used for an infant. I know I am skinny, but a 1 cm button is absolutely ridiculous for me.

My dietician called Nutricia (they distribute the Mic-key buttons here in Austria) and they told her the correct procedure was to measure the stoma on site, the cm markings on the peg-tube are far too inaccurate.Nutricia then sent four different button sizes that should fit me to my dietician who in turn gave me the package yesterday - I then went to work with me package full of mic-key buttons - about worth € 1000. Yikes. I did not let the bag go while on the subway for fear of forgetting it. (I am known for forgetting stuff in the subway trains.)

Monday, June 29, 2009

I get to eat three "real" meals a day at the moment, have to tubefeed two meals plus continuous tube feeds during the night. Those three meals of real food are the highlights of my day. I have been able to slowly integrate some foods again and I can now have some really good dinners again. I have to tubefeeds two meals because with the limited foods I can tolerate I would not be able to keep myself healthy and get back into the gaining weight business. Even though I would love to go back to eating six meals orally immediately I know that this is what is best for me. Tubefeeding two meals also means that I can have even more calories because my tube feed is a lot easier to digest for my stomach and helps with my motility issues and that way I am less full.

I saw my dietician today and got weighed - and I am up!!!! This is the first time I have gained any weight since March when all this diarrhea started. I am so happy! So I guess tube-feeding during the day is worth the inconvenience.

Sunday, June 28, 2009

My parents have been divorced for 16 years now. I am not an advocate for divorce but it was the best thing for them and for us as a family to do. My parents never fought, at least not in front of us so when they told my brother and I that they were going to get separated it came as a real surprise. But on the other hand both my brother and I could always feel the tension between them and watch our Mum get sicker and sicker (she was suffering from severe panic attacks at that point and had had nervous breakdowns.)

They got divorced in October and in December my Mum started dating Mayo and they have been together ever since. Mayo had just gotten divorced himself and was a single father to his son Simon, who is the same age as my brother (and therefore three years younger than I).

Mum and Mayo have been together ever since, for the longest time they did not live together, first because both of them still had to take care of their children and once both boys had left to live by themselves they continued to live alone. They had also always said that they would never get married. This all changed in April 2005 when Mayo asked Mum to move in with him and marry him (out of the blue for all of us) and they got married in October of the same year.

I have known my Stepdad for 16 years now and my relationship with him has changed from a "you are my Mum's new boyfriend, I don't know if I can trust you" relationship to a "you are my Stepdad and I love you for that and I honor your advice" relationship.About 8 years ago - when I was still living in Canada - I had flown home for a surprise Christmas visit, I had a dream. It was the night before I had to fly back to Canada and I had to get up at 4 Am to be at the airport in time for my 6.30 flight. I dreamt that I called Mayo "Papa" (German for Dad). I guess that's when I realized that even though he was only my Mum's boyfriend he had really started to become a father figure to me.

Don't get me wrong - I love my biological father and I have a good relationship with him, but he is remarried with a little daughter and I understand that it is very important for his wife to be a family - just the three of them. I know that he loves me and that I will always remain his firstborn daughter, but still, sometimes I miss having a "place" in his life.

It must be hard for children with divorced parents when both parents get remarried and have children together and want to be a family. I guess I would feel really lost if I did not have a place to come home to and to call a home. While my Dad still lives in the same house we lived in until my parents got divorced it does not feel like home to me anymore. Instead coming home for me means coming home to my Mum's and Stepdad's condo - always having a place to stay in their guest room and always feeling welcome. Even though Mayo is not my biological father it feels like coming home to see my parents.

When I call my Mum to ask if M and I can come home for the weekend - she usually says, of course you can but I do want to ask your father as well - and by that she means my Stepdad.Having my Mum refer to Mayo as my father sometimes gives me the feeling that I still do have "parents". It used to be really hard for me that I could never speak of my parents as an entity - but now I can. I can say - my parents went to Namibia last year or I am visiting my parents this weekend or my parents are coming for a visit - and I feel completely normal, I feel like marriages can work out, people can be happily married all their life and I feel like I do have a positive role model of how to make a relationship work.

And then there are those Freudian slips - sometimes it happens that I call Mayo "Papa" and last evening I realized that I am not the only one cherishing the fact that he has one set of parents that he can always count on. My Stepbrother Simon's Mum took off to Hawaii after divorcing Mayo and got married there, divorced again, moved to Germany then to India ..... She did not take care of Simon whatsoever and I guess my Mum was the only female role model he had. Yesterday evening M and I met up with Simon for a couple drinks and I asked him how his kitchen planning came along (he and his girlfriend are about to move in together) and he said to me: "We have just been to see the same kitchen dealer that Mum and Dad used for their kitchen." He then realized what he had just said and corrected himself, but I smiled at him and he smiled at me.

So yes, I am happy to have two Dads. They both offer me different perspectives and I can learn different things from both of them and they both love me unconditionally. When M and I have children I want them both to be Granddads and I know our children will be loved by both of them equally. I know my Stepdad will think of my future children as his grandchildren the same way my Mum will think of Simon's future children as her grandchildren.

Even though divorce never is easy on anyone - it really has opened up a lot for this family and made me end up with two fathers.

Friday, June 26, 2009

A friend of mine posted on facebook yesterday, that, even though her new house is 95 % hardwood floors her cat always pukes on the carpet.
That's when I started to think about Murphy's law for cats today.

The puke on carpet thing is something I know just too well. My oldest cat Laura is a puke-cat and she loves to puke onto about anything but our hardwood floors - like for example our off-white living room carpet, the couch she sleeps on at night (we always keep a blanket on it for that very reason - just throw the blanket in the washer and all is well again (we actually have a back-up blanket for those days/nights the other blanket is still drying out after having washed it) - and boy, does she ever need that blanket on her couch (I have to wash it at least once a week). And lets not forget about the one time she puked from the chair she sat at into a multiple outlet strip causing a short-circuit.

Then there is the dirty litter box law. I use clumping cat litter and you know how after a while there comes a time when you have to empty out the litter box completely and not just get rid of the clumps and shit. I usually realize that late at night before going to sleep and then plan it for first thing next morning - it is always during that night that one of the cats decides to go on strike for a cleaner litter box and craps right in front of it.

And now my favourite Murphy's law for cats (and most expensive one): 95 % of the time my cats get sick on a weekend - Sunday visits to the vet are especially expensive. And this is why I am thinking about Murphy's law for cats right now - it is Friday evening and I have just noticed that Aimee is getting her usual summer eye infection - if I had noticed a couple hours earlier I would have been able to get some eye drops at the vets for her without paying a weekend-fee - but no such luck here. So guess what I will be doing tomorrow morning? Calling the vets and set up an appointment and pay one and a half time as much. But maybe I am lucky and I can convince the vet on duty that all she needs are her usual eye drops and maybe I don't have to take her in to be looked at - that would really save me some money!

Tuesday, June 23, 2009

I love horseback riding and once I was over my intestinal flu and felt a bit stronger again I decided that it was high time to get back on Mo (the horse I always get to ride). I was a bit apprehensive at first because I wasn't quite sure if the g-tube site would hurt during horseback riding (I don't have a balloon type g-tube, but one with an internal and external fixation device - which means that any type of activity that my stomach muscles are involved I can feel the inner and outer fixation device pull on my skin and stomach). Horseback riding itself went really well, didn't hurt whatsoever. But, when I was ready to dismount Mo I did what I always do, lean forwards onto the saddle and swing my right leg over Mo's back. Well, just imagine leaning forwards onto a very hard saddle full force forgetting that you have a g-tube with an internal and external fixation device! To say it hurt is an understatement. But I am used to some pain inside my stomach from the internal fixation device, so I didn't really think anything was wrong until I changed my dressing later and noticed that I had bled through - there were not cuts on my skin, so obviously I must have hurt my stomach walls and leaked blood through the stoma. F...k! I changed my dressing, went to bed, still some blood in the morning, but a lot better. I did write an e-mail to Prof. H just in case and he said as long as it is not overly hurting and it stops leaking through bloody within the next two days all is well. Now, two days later, it is a lot better now, but it is still hurting a bit. Therefore I have decided not to go horseback riding again this weekend. I am due to get the button next week and it has a balloon inside instead of the internal fixation device - hopefully that will feel better during sports.

Saturday, June 20, 2009

My Grandparents are real cat lovers - both of them. They used to have a cat (Mucki) for 16 years - Mucki was the first cat that I had fallen in love with and he died when I was 10 years old. My Grandparents never got another cat after that, they catsat for my several of my cats and actually spent a week in Vienna last summer taking catsitting our three felines during our vacation in Italy. Usually we have a cat-sitter come in once day when we are on vacation, but since we had just gotten a new kitten we didn't want to leave them all alone for a whole week. My Grandparents have a small cabin in the alps and they have been feeding stray cats and cats from nearby farms for years now. My Grandparents are both in their seventies, still very mobile and active (for example they biked 2.000 km last year - I think they are in better shape than I am), but they have slowed down in the last few years, they still like to travel, but are not travelling as much and for as many extended periods anymore. They are both quite happy and content during spring and summer, when they can be active and can be outdoors, but the fall and the winters are quite long for them now (and they tend to go on each others nerves).When I was in hospital in December my aunt came for a visit and in the spur of the moment we decided that my Grandparents need a cat in their life. I had gotten two of my cats from my best friend's parents' farm and I called her afterwards telling her about our plan and "reserving" a kitten from the first spring litter. I am not good at keeping secrets all and I had a really hard time keeping my mouth shut and not telling my Grandma about our surprise present. I had to wait until the beginning of April before our little surprise kitten was born - and then it was even harder to not tell my Grandma! I knew I had to keep quiet for another 8 weeks before the kitten was old enough to be separated from her mother. It was so hard!!!! I love giving presents to other people and watching them be happy with a present makes me so incredibly happy myself - I just love that feeling in my heart! My Grandma kept saying that they were going to come to Vienna again during the summer and catsit for us when we are on vacation and I kept thinking to myself - no you won't - you will have your own little feline buddy to take care of!Two weeks ago after I had almost recovered from my intestinal flu, M and I drove to Mannersdorf to pick up the kitten and take her home to Linz to my Grandparents. We snuck up the stairs and I called up through the open door to tell my Grandma that she had to sit down in the kitchen. I walked into the kitchen with the cat carrier behind my back and then I started telling my Grandparents that we had a present for them and that it came from all of us (the whole family) but especially from M and I - I then opened the carrier, took the cat out and put it on my Grandma's lap. My Grandma just kept gasping and saying "What are we going to do with a cat" and "My heart is beating really fast" and "What about our cabin in the alps, what are we going to do with her all the times we are at the cabin?". And I just kept saying that everything was going to be fine, that there are cat-sitters, that they could take the cat with them because young cats easily adapt to different places and get used to being at different places and above all - they need someone to be around in their condo during all those long fall and winter evenings. My Grandma sighed, looked at the kitten, then looked at my Grandpa and asked him: "Well Franz, what are we going to call her?" and he replied "Mucki, of course". That's how Mucki the second came into their lives. Now - two weeks later, Mucki has already become an important part of their daily life - she sits with them in the kitchen when they are eating and follows them to the living room when they are watching TV. Every night she curls up at my Grandma's feet and sleeps right beside her the whole night. She has already been at the cabin with them for five days and like I said - she adapted really well and enjoyed finding all the spiders that tend to lurk around a wooden cabin. Talking to my Grandma on the phone has become so different now - she giggles through most our conversations and tells me kitty tales. She really sounds happy. So yes, we did bring joy and happiness into the life of my Grandparents.

I am still trying to figure out all the ins and outs of blogger. After successfully managing to add a stat counter I have now also changed the comment settings to include anonymous commenting as well (comments from people without a blogger or google ID). I have also decided that I will get myself mobile internet - something I have been pondering on for quite some time. I bought a netbook in March, but really what's the purpose of having a netbook if you don't have mobile internet? I am excited about the prospect of being able to be online wherever I am.

Thursday, June 18, 2009

I am still getting used to the g-tube. With the ng-tube flushing my tube was quite easy. Since the tube went from my stomach up my esophagus and out through my nose, I could open the tube without having any flow-backs. Well, things are a lot different with the g-tube. If I open the cap of the g-tube and open the clamp as well, my stomach contents - depending on the pressure - either flow out slowly or erupt like a geyser. I was at work this afternoon, it was 30 °C outside and probably close to that inside in our office (that I share with two other people) as well. I had just finished my lunch time tube feeding, clamped my tube, disconnected the giving set, attached my syringe to my feeding tube, opened the clamp and started flushing. Unfortunately I had not been very careful when attaching the syringe and it slipped from the connector and my stomach contents proceeded to erupt geyser-like onto my shirt, skirt and chair! And that smells! Badly! Indeed! Even though I washed out my shirt I continued to smell that very distinctive odour of half-digested formula - very much like baby-formula-spit-up! I could not imagine myself sitting in our very warm office smelling like that! And then I remembered - I had done some clothes shopping prior to coming into work and so I put on my brand new pair of shorts (that I had deemed way too short for office work while trying them on - but hey, better showing off my legs than smelling badly) and shirt.
By the way - three hours later, when I wanted to flush my tube after my afternoon feeding the same thing happened again. It was not my day today.

Sunday, June 14, 2009

When I received a nasogastric feeding tube in December 2008 for supplemental night time feedings due to multiple food intolerances and digestive issues my fiance and I came up with the stories of "Tube Girl" - my superwoman alter ego who saves the world from starvation. Whenever I was having a hard time being stared at in public my fiance would tell me stories about Tube Girl's super powers and her adventures. He even invented a secret identity for himself - "CC" aka "Calorie Counter" - Tube Girl's faithful right hand in her fight against starvation.After six long months of ng tube feeding I received a g-tube almost three weeks ago and therefore continue to be a tube girl.

About Me

I have chronic digestive problems (gastroparesis, exocrine pancreatic insufficieny, malabsorption, histamine intolerance, fructose malabsorption, lactose intolerance, and multiple pollen associated food allergies).
When I received a nasogastric feeding tube in December 2008 for supplemental night time feedings my fiance and I came up with the stories of "Tube Girl" - my superwoman alter ego who saves the world from starvation in order to put a bit of fun into having an ng-tube.
After six long months of ng tube feeding I received a g-tube at the end of May '09. Check out the posts labeled "The story so far" for more information.
As of July 2010 I have to rely on a semi-elemental formula for malabsorption issues. Fall 2010 - finally had my g-button converted to a gj-button.
Update Dec 2010 - because the gj-buttons wouldn't stay put, I had PEG/J put in with a pigtail for fixation in the jejunum.
Update Jan 2011 - diagnosed with intestinal dysmotility issues. Update Aug 2011 - PEJ placed.